ONCE UPON A GENE - Episode 128 - Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing
Heidi Edwards, President and Founder of Sisters’ Hope Foundation, has a family history of adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP). She's on a mission through the work of Sisters’ Hope Foundation to advocate and spread awareness for ALSP patients.
EPISODE HIGHLIGHTS
Where did your ALSP journey begin?
Twenty years ago, my aunt was the first to become sick with what we know now was ALSP. We've since had five family members pass away from the disease. I've lost two sisters and started Sisters’ Hope Foundation to honor my sisters, my mom and her siblings, to raise awareness and educate people about ALSP and to connect people affected by the disease. My family now has two additional people who have been diagnosed with the CS1FR gene mutation.
What is ALSP and what are the symptoms?
ALSP is a rare, progressive neurological disease that causes changes to specific areas of the brain. Mutations occur in the CS1FR gene. It's an autosomal dominant genetic, which means a child of a parent with the gene has a 50% chance of inheriting the gene and contracting the illness. ALSP causes dementia and movement issues, and early onset symptoms include personality changes like depression, memory issues or seizures. As ALSP progresses, it causes movement issues, slow movement, difficulty walking, tremors or muscle stiffness. In early stages, it affects the left side of the body and the entire body with disease progression.
Can you tell us about ALSP Awareness Month?
The month of March is ALSP Awareness Month, which is also my and my twin sister Holly's birthday month. Holly designated the entire month of March as our birthday month and we spent the time celebrating and having fun. March also signifies new beginnings with the start of Spring and joy of the longer days after the shorter, colder months. For all these reasons, I thought March was the perfect month for spreading ALSP awareness. This month we kicked off a campaign called Bridging the Gap in ALSP Awareness. We had four bridges lit up pink and purple in Massachusetts and we're contacting everyone in the neurology field to educate them and raise awareness of this rare disease that doesn't have a cure.
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